Zachary and Imogen Jones are brother and sister with cystic fibrosis (CF). While Imogen is older, she received her CF diagnosis after her brother. It was actually through educational programs for Zachary’s condition that Imogen’s mother suspected she had the condition too. The crazy part? Doctors had previously told the family Imogen had nothing to worry about.
Imogen’s story
When Imogen was a newborn she had a standard heel prick test to test for CF. She was told she was a carrier for the disorder but didn’t have it herself. Her brother Zachary, underwent the same heel prick test and was told he had the illness. The family instantly took every effort to learn all they could about this new diagnosis and how to best support their son. They attended educational programs and learned how to minimize the chance of infection and what precautionary measures to take. Through these seminars they also learned the hallmark signs of CF and how to recognize it.
Jo, Imogen’s mother, knew it sounded just like her daughter. Imogen had periods of unexplained weight loss, and numerous infections, both of which doctors said was nothing to worry about. They said the weight fluctuations was just a normal part of puberty and the infections weren’t of concern. But after learning more about CF, Jo knew she had to get her daughter checked again.
It wasn’t until 2013 that Imogen finally received her diagnosis, just four months after her brother. She immediately began treatment like Zachary, which itself brought its own challenges.
The challenges of being siblings with CF
Since those with CF are prone to infection, patients are generally advised to keep contact with other patients to a minimum. That’s just not an option for Imogen and Zachary. The two plus their brother Archie (who thankfully doesn’t have CF) are inseparable.
The family simply has to take extra precautions that most don’t have to worry about. All of their medications are kept in separate places, their therapies are completed separately, and when one does get sick, they both are put on antibiotics just in case.
The family says they’re not upset with their doctors for not diagnosing Imogen earlier. After all, they were basing their actions off a test which supposedly confirmed she was CF free. However, Imogen’s story does showcase the need for a greater number of doctors skilled in CF. It comes down to needing greater awareness and education about the condition. That way more doctors can spot the signs more quickly, and ensure patients are getting the care they need as quickly as possible. Let’s be clear: not every doctor needs to be a CF specialist. However, more education would ensure that doctors are able to quickly refer those they suspect of having CF to a specialist who can properly help them.
You can read more about this family’s CF story here.
